Blogging our life with a special needs child
Maddison’s life has been full of medical challenges from the very first day. Tube feeding, hip dysplasia, and hospital stays just to name a few. But her medical disabilities aren’t going to hold her back.
Our daughter Maddison has never been one where we could just put her in a fresh pair of pyjamas and a clean diaper and lay her down to sleep. Because of Maddison’s disabilities, her nighttime routine is a little more complex. Getting her ready for bedtime includes some unusual steps; which includes a feeding tube and an injection. We recorded a video for our YouTube channel showcasing our nighttime routine for putting Maddison to bed.
It’s been a long road to get where we are. Even the conversation around changing Maddison’s feeding tube from a g/j to a g-tube felt like only a dream just a few months ago. Yet here we are, the day finally came. March 9th 2019 marks the day we said goodbye to Maddison’s g/j feeding tube, and hello to the new g-tube.
*Video of tube change included* Continue reading “Graduating from the G/J tube”
I’ll start with a little feeding history of our daughter Maddison:
Maddison has been tube fed her entire life. It all started with what I shared in her birth story – that when she was born we knew something wasn’t quite right. We discovered in our NICU stay that Maddison had a bulbar dysfunction and lacked the ability to suck and swallow. Continue reading “Feeding Update: Feeding Into The Stomach”
Doing therapy with Maddison is a daily occurrence. Sometimes it’s structured, sometimes it through play. But we know that Maddison needs it, so we keep it up! The only way to build muscles is to work them! Continue reading “Maddison’s Exercise Routine”
On November 13, 2018 we had 3 appointments out at BC Children’s Hospital for Maddison. We were doing the 2-hour drive in on a beautiful sunny day from Chilliwack to Vancouver, BC. There was a lot of anticipation for the appointments ahead, and apparently a lot of nerves as well. A Day at the Hospital. Continue reading “A Day at the Hospital”
On October 26, 2018, we took the plunge and launched our family’s YouTube channel! We’ve been sharing our life on our blog here, as well as our social media channels through Facebook and Instagram. But we’ve been wanting to be able to reach a larger audience – and hopefully impact more people – so we made our first YouTube video. Continue reading “We’re on YouTube!”
There is no doubt that I was extremely wary about taking Maddison along for our first camping trip. You see, a toddler who is fed through a feeding tube, and camping, aren’t really two things that go hand-in-hand.
But we don’t want Maddison’s medical conditions to give us an illusion that she is limited when she actually isn’t. Continue reading “Camping trip 2018”
Unfortunately, when it comes to finding clothes for a baby with a feeding tube, it’s not one-size fits all. Thankfully I was introduced to Tummy Tunnels™ shortly after Maddison had her g-tube placed. The iron-on patches allow for easy adaption to most clothing to accommodate access for the feeding tube.
Continue reading “Tummy Tunnels”
When you think about going to the beach with children, you know it’s going to be a lot of work, but for the most part it’s pretty straight forward. You pack the basics; towels, umbrella, snacks, floaty, sunscreen… You give them a bucket and a shovel and they play for hours.
Life with Maddison isn’t straight forward though, and I was slightly intimidated taking Maddison on her first real beach experience. Medically complex children tend to make things a little more… complex. But I did my best to think everything through ahead of time. I knew that doing something like a beach trip on a whim just isn’t possible, so I had to make sure I did some serious planning before we left the house.
Continue reading “Family Beach Trip 2018”
Maddison Ohs has proven to be quite the mystery ever since she was born. And it appears she is holding on to that reputation. Even when we left the NICU, we went home without clear answers as to what was causing Maddison’s symptoms, or even the condition itself. It has been an ongoing investigation trying to understand Maddison. Continue reading “Update: IMAGINE Research Study”